Your MS Questions, Expert Answers

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It’s human nature to shy away from asking questions that we think are dumb, but it really is true. There’s no such thing as a dumb question. Our members often find the rapid-fire questions at the end of each program very helpful. So we offered an hour-long question-and-answer session with plenty of time to cover a wide range of topics.

As always, our expert guests answer questions from the audience.

This HealthTalk program is sponsored through an educational grant from MS ActiveSource .

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These programs are supported by an MS ActiveSource unrestricted educational grant from Biogen Idec. MS ActiveSource is a service mark of Biogen Idec. The opinions expressed on this program are solely the views of our guests. They are not necessarily the views of HealthTalk, our sponsor or any outside organization. As always, please consult your own physician for the medical advice most appropriate for you.

Dr. S. Mitch Freedman:

One of the biggest questions is, "Do I really have MS? How certain are you about the diagnosis?" And I'll get asked that if I see my patients for the first time or if I'm asked to see patients for second or third opinions. So patients need to be reassured by their physician of whether or not the diagnosis is accurate. The second question we get asked a lot is "Which is the proper treatment for me?" There are so many options available. There's a lot of information, [much] of which is conflicting. And the patients often need help in sorting through this incredible thicket of information. And another question we get asked very commonly is, "How will this illness affect me as time goes on? Is it going to affect my ability to work, my ability to interact with my family, my ability to have a family?" And so those are the kinds of questions that arise very commonly when we first work with our patients.

Trevis L. Gleason:

There was recently some news from the makers of Tysabri. They've announced that they are reapplying for application from the FDA to put Tysabri back on the market.

Dr. Freedman:

For those of you who don't know, Tysabri is the brand name for a product called natalizumab. This is a unique type of medication for multiple sclerosis. It is what we call a selective adhesion molecule inhibitor, and that's a mouthful. But what it means is the drug works by blocking the way white blood cells go from the bloodstream into the nervous system. Two studies were done recently which suggested that this drug has a powerful effect on diminishing attack rate or relapse rate and has a very substantial effect on preventing the progression of disability. Unfortunately, what happened is with one of the two studies, two patients were found who had a very serious neurologic illness. One died of a condition called progressive multifocal leukoencephalopathy, or PML. The second patient had the same condition, although has not passed away. A third patient was found who also had this condition but was being treated with Tysabri for a different medical illness, that is, inflammatory bowel disease. Now, PML is a terribly rare condition. It is generally seen in patients who have other illnesses where there is a serious alteration in the immune system. And so this obviously raised major safety concerns about whether this drug, as good as it is, could or should be released on the market. So what happened was that Biogen Idec and Elan, which were the two companies that worked on the drug, once these two patients were found, [they] pulled the drug from the market in an effort to sort of spend some time to relook at the safety. A major effort was made to reexamine all the patients who had been on Tysabri for two years, all the patients in the clinical studies, and they were able to review well over 90 percent of the patients who were in the studies. And in doing a very careful safety analysis, they did not fortunately turn up any other cases of progressive multifocal leukoencephalopathy than those two. So it appeared that the basic safety of the drug, certainly from the original trials, was well within an acceptable range. So what Biogen Idec and Elan have done is they're resubmitting the data to the FDA, which will go through a process of evaluating the data and determine is the drug safe for marketing, under what conditions is it safe? Are there specific limitations or specific patients who should not be exposed to the medicine? Are there certain patients where it's appropriate? So that's where we are at this point. So currently, the pharmaceutical companies are in the process of resubmitting this. The FDA will then make a decision, and this is a decision they have to make on all medications that, when they look at any submission of an application for medicine, they will look at does the medicine do what it's supposed to do? And secondly, does it do it safely? And then, they will make a determination under what conditions it will or will not be approved. Many in the neurology community are very hopeful that the drug will be approved. It's very clear to everybody that there is a safety issue, and there will have to be that [consideration] when the drug, if the drug is, in fact, approved. I think there will be very specific criteria under which patients and physicians will consider this drug for treatment.

Trevis:

Well, I can tell you certainly that it's not only the neurology community that's excited about hearing what happens. Several of my friends were in the clinical study and are very excited to see it coming back. I know that nobody has a crystal ball into medicine, and certainly not into the politics that's behind it as well. But if you were to guess, give us a ballpark - six months, eight months, a year-and-a-half?

Dr. Freedman:

What I would think is that it's going to take several months for the FDA to review this mountain of data. So I think we're really talking on the order of months. I don't think, at least from my own perspective, it's going to take years. I think it will take months. And I think a lot of people are looking at this very carefully because this is an unusually interesting medication in the sense that it was able to demonstrate a rather substantial clinical effect. Many argue that the drug has a more powerful clinical effect than those medicines which we have available to us at the present time. That being said, the other medicines have a long track record. If one looks at Betaseron, which came out in 1993, and Avonex [interferon beta-1a], which came out in '95, and then Copaxone [glatiramer] in '96 or '97, and Rebif [interferon beta-1a] was marketed in this country more recently, although it's been in Europe a little longer. We do have a substantial amount of information about safety on those drugs. So one is balancing off the effectiveness of the newer drug versus the effectiveness and the safety that we know about with the older drug. And I think that this is going to be a problem that we're going to face in the next 10 years in terms of there are several others drugs in the pipeline and the question will be will these be safe? How much information is going to be necessary to allow the neurology community, the patient community and the general public to feel comfortable with any newer medicine that comes out? So I think the decision that the FDA faces, from my perspective, will have quite a ripple effect both in terms of the future of newer drugs as well as the future of this current drug.

Trevis:

As I mentioned, in our studio is nurse Piper, and, Piper, many in our audience would probably appreciate getting your perspective on making the most of the doctor's visits. I know when we go in, there's the tendency to forget questions and not bring up things. Do you have any tips for our audience on how to make a doctor's office the most productive we can?

Piper Piper:

There are many ways to make the best of your physician's visit. Usually, we do ask patients to write down specific questions they may have and bring that with them. We also sometimes suggest an MS diary. One of the questions we hear the most is how do I know my medication is working? And this is a very complicated and difficult question to answer. And, unfortunately, with MS, it's not that simple. Also, it's important to bring a list of medications with you or write them down. Also, maybe you tried some different medications for specific symptoms and to kind of bring that to the table and say, "You know, I tried this. It didn't work." Maybe we need to increase it. Or maybe you were having side effects. Another thing I think of is work issues. A lot of people when they leave the office, they say, "I forgot to have my physician fill this out, or I have some disability paperwork or short-term disability, long-term disability." And we'd be happy to fill those out, but a lot of times it's easier if you bring that to the appointment. And finally, I also think about follow-up. It's really important when you leave the office to know what the next step is. Do you need to come back in three to six months? Do you need an MRI? Who do you need to call? We always try to tell patients, "You know our direct numbers for the nurses so that you know if you're having a symptom, you can call and you can speak to someone immediately." And also we tell patients, "When in doubt, call." You may have a symptom, and you may not want to do anything about it. It's just kind of annoying, but you just want to document that so that we can kind of set up a system to see how you're doing. So, again, you need to know who to call, when to call, and what the next step is.

Trevis:

You'd mentioned medications. I know that my neurologist and his staff, they want to know not just prescription meds but anything over the counter that I'm taking as well.

Now, folks, your questions can be on symptom management, treatment-related questions. They can deal with a variety of quality-of-life issues, anything. Now, Piper, if you could, do you see, say, one issue more than another when folks come into your office, just like I asked Dr. Freedman about?

Piper:

Well, usually when I think of symptom management and I think of quality of life, two main symptoms come to mind. Fatigue: Fatigue is probably one of the most common and disabling symptoms of MS, and it's very hard to treat. And I think the first thing you need to know is you need to know your body. So you need to know when you're at your best. Some people know they're at their best in the morning, and so they may schedule activities at that point. Or they may say, "I have a big event this evening, and I might need to take a nap." So, again, knowing your body [is important]. Another thing is education. And they don't understand that fatigue for MS can be very different and can be very disabling. Again, another thing we hear all the time is, "But you look so good." Every MS patient has heard that. So I tell patients the National MS Society has a great booklet called, "But You Look So Good." And you can give that to co-workers, your family members, your friends so they understand that fatigue is real and that sometimes you need help in fighting fatigue. And then the other thing is medications. Of course, there are medications to help, but, again, you need to talk to your healthcare provider about that.

The other symptom I think of is bladder. And I don't think we talk about this enough. Anybody who's ever had a urinary tract infection knows that it impacts quality of life. If you're in the bathroom all day, you're impacting your quality of life. So, again, a lot of MS patients do have problems with bladders. So, again, talking to your healthcare provider and saying maybe a bladder program or maybe medications might work for you [is important].

I have a patient who told me that one little thing impacted her quality of life, or actually improved her quality of life more than anything else. It actually changed her life. And this was a particular patient who has MS, and she was having bladder issues. And she was actually having bladder incontinence right before sexual intercourse. And so this was very embarrassing for her. It was becoming a big problem. And so she was avoiding sex with her husband. She did have a problem where she couldn't empty her bladder at certain times, and so she worked with a urologist, and the end of the story is she had in-and-out catheterization. And so that helps a lot of people. I think she has a good sex life, and she said that that changed her life. And now she and her husband, that's just one more challenge that they don't have to face. And then also, men with condom catheters, so I guess the idea is just with your symptoms, talk to your healthcare provider because there are answers.

Trevis:

Many of you know that I, myself, have MS. I was diagnosed with relapsing-remitting MS in 2001, and about a year-and-a-half later that was changed to secondary-progressive MS.

Dr. Freedman, I want to ask this question of you because I know a lot of people have this symptom and aren't exactly aware of it. It's called Lhermitte's sign. And I know it, for myself, it's when I bend my neck down, I get this electrical sensation that goes down my spine if I move my head the wrong way and do something, both fine and gross at the same time, with my hands. First of all, who was Lhermitte? And tell us about this sign.

Dr. Freedman:

Lhermitte was a French neurologist who lived in Paris in the early part of the 20th century and described this phenomenon, which I think you've described quite well. Patients will often say that if they flex their neck forward, they get an electrical sensation that radiates into the arms, down the neck, or into the back or the legs. Some people have described it to be like a buzzer going off. And some have said it's like the fingers in the socket. It's a very annoying, it's what we call a paroxysmal symptom, that is, something which comes on acutely and goes away almost as acutely. It reflects inflammation in the upper spinal cord that is called the cervical spine, part of the spinal cord in the neck. It is not unique to MS. People who have cervical disk disease or people who have had trauma to the neck will sometimes describe this. It is a sensory phenomenon. Usually, patients find that it's annoying. But some patients find it more than just a trivial process. They find it really is quite uncomfortable and quite disruptive. The kinds of medicines that physicians often use to try to alleviate this are some of the drugs that are conventionally used for epilepsy, the seizure drugs; drugs like gabapentin, which is branded as Neurontin [garbapentin]; drugs like carbamazepine, which is Tegretol. Those are the kinds of ways that we approach it. I think for some patients just knowing what the phenomenon is, [they] are often able to put up with it, and it very often comes and goes. But it simply is a sensory abnormality that is seen in patients who have MS that involves the cervical spine. MS is a disease which affects both the brain and the spinal cord, and the kinds of symptoms that patients have simply reflect where in the nervous system the breakdown of myelin or the inflammation is actually occurring. It doesn't have anything to do with prognosis or how severe the disease is or where the disease is going. It just simply reflects the fact that the disease, at the time you're experiencing this phenomenon, is involving your cervical spine.

Trevis:

Well, since you mentioned the cervical spine, there's an e-mail question from Cheryl in Colorado Springs. And the question is, "My latest MRI shows that I have a lesion on my spine, in addition to the four lesions that I have on my brain, which are the same four lesions that I had at diagnosis two years ago. One of the lesions in my brain has increased in size, but how do lesions on the spine affect MS versus how those in the brain do?"

Dr. Freedman:

They do the same thing. The symptoms, we know that multiple sclerosis is a disease that involves the central nervous system. The central nervous system is made up of the brain, the brain stem and the spinal cord. MS characteristically affects certain parts of the nervous system more than others - the optic nerves, the cerebellum, the brain stem and the cervical spine. Conventionally, over time, when MRI was first developed, they didn't have the technology to look at the cervical spine. And those cervical spine MRIs that were first developed were just technically suboptimal or not very useful. So much of the early literature on MS in MRI really focuses on the brain. And, in fact, in many patients, the spine is involved. Most neurologists now when they're working with their patients will look at both the brain and cervical spine, and particularly if one has spinal cord symptoms. Spinal cord symptoms are things like numbness and weakness in the arms and legs and bladder or bowel dysfunction, like we've talked about so far. But there's nothing really different about the type of symptoms. Now, the spinal cord is sort of the final common pathway before the nerves go out into the limbs and various parts of the body. And it's fairly small. And so if small areas of the spinal cord are involved, they tend to have a more widespread effect simply because there's not much wiggle room. You can have the areas of inflammation or plaques, as they're often called, in the brain. And there's lots of other brain that may take over. If you have an area of inflammation that's several millimeters in size in the spinal cord, there's less room there for normal tissue. And so, in some ways the spinal cord symptoms have the potential for being more serious because there's just less room for error. There's a small core of patients whose MRIs never show much in the brain, and most of what shows up is in the spinal cord. So I think that, unfortunately, when one looks in the literature to find a lot of information about MRIs on the cord, there's really not very much there. There's certainly an enormous amount of literature on MRIs of the brain. I think over time, we'll have a lot more information about the course of MS with regard to the spinal cord.

Trevis:

Now is it a particular type of MS that affects only the spinal cord?

Dr. Freedman:

Well, there's a rare form called Devic's syndrome, which tends to affect the spinal cord and the optic nerves. But, in general, regular MS patients may have spinal cord involvement. Now people who have what is called primary-progressive MS tend to have more involvement of the spinal cord than patients who have relapsing-remitting or even secondary-progressive. But as people have begun to look at MS in even more and more detail than we used to, it's pretty clear that what we call MS may be several diseases. The disease acts very different biologically from patient to patient. And I think people are trying to understand why is it one person with MS can function pretty well, can look so good, and yet other patients are really terribly disabled, have to give up work - why is that? Right now, we don't know exactly why that is. And I think there's an area of research that's trying to figure out how to define which patient is going to have a more difficult time than others so that, number one, we can begin to treat more selectively. If we knew from the very beginning that a patient had a chance for a relatively benign course for the disease, you might approach that patient differently than someone who looks like they have a more aggressive form of the disease. And those are areas that people are looking at. So far, we don't have good markers to predict accurately whose going to do what.

Trevis:

Speaking of benign forms of MS, we have an e-mail question from Mikki in Seattle, Washington, "What is benign MS? Is it a subset of relapsing-remitting, or is it in its own category like relapsing-remitting or secondary-progressive?"

Dr. Freedman:

Well, the implication of benign MS is that you may have an attack or two, and then, over time, nothing else happens. The problem, as I've said, is that to define who is going to have a relatively easy course with this disease and who is not, is simply something we can't do. So if I see a patient with optic neuritis or spinal cord dysfunction, they have an MRI that shows several lesions, I can say, okay, this patient has MS and I can say that the course of MS will vary. But I can't say at the very beginning who is benign or not. In the past, when we had no treatments, this was an academic exercise. Now it's not such an academic exercise because we do have disease-modifying agents available. I think one can only be certain about benign MS in retrospect. I've seen patients who've come in who've had an attack or two over 10 or 15 years. In between, they're fine, but I'm looking at them now 10 or 15 years down the road. There would have been no way for me to have defined that as benign at the very beginning.

Trevis:

The next question is from Linda in Phoenix who asks, "Is there anything that I can do to take away the burning in my feet and legs caused by neuropathy?"

Dr. Freedman:

When I was a medical student, which was 30 years ago, we were told MS did not cause pain. We recognize that that's simply preposterous, that unfortunately many patients have varying degrees of pain. If one demyelinates the sensory nerves, you may, in some situations, get numbness. In some situations, you may get tingling. And in some situations, you may get true pain. Because this pain is thought to be coming from disruption of the neuropathways, and then there is an electrical sort of irritability to the pain. Patients often will tell you, very much like the Lhermitte sign that you described, that the pain comes and goes. It comes in waves as a stabbing or very irritating character to it. People have said, "Well, why don't we take medicines that have conventionally been used for treating epilepsy and use those for treating pain? Because in epilepsy what there is an electrical irritability of the nerve cells in the brain, which causes seizures. And the analogy is maybe in then patients who have neurologic or nerve pain, with MS there's an electrical irritability of those nerves. So the drugs that are conventionally used are drugs that are conventionally used for treatment of seizures. Now none of these drugs are FDA-approved for treatment of neurologic pain, but most neurologists and people who work with MS patients understand this. And we explain this to our patients that there aren't a lot of studies using these drugs specifically in MS, but they're what we use. So the examples are drugs like gabapentin, which is Neurontin; drugs like oxcarbazepine, which is Trileptal; medicines like valproic acid, which is Depakote. And there are a whole series of these drugs. And some of this is trial and error. You work with the medicines, and what you're balancing off are side effects versus benefits. Are there studies that demonstrate one of these is better than the other? No, there are not even studies that prove that these drugs work. And so a lot of this is truly empirical. And what we're doing is trying to figure out what works and what does not work. And these drugs are generally safe. You need to discuss with your doctor, with whatever drug you work with, what are the safety issues on a given medication? But fundamentally these drugs are safe. They tend to be terribly expensive, and that becomes the limiting issue for a number of patients. The other medicines that have been used for pain are some of the drugs that have been conventionally used as anti-depressants because these drugs have an effect on modifying some of the central or brain pain pathways. So if your doctor says, "For the pain, I want to try you on something like Prozac or amitriptyline," your physician doesn't think you're crazy. It's just that these medicines are often used for alleviating pain. And these drugs have been around for a long time. There are probably more studies on the use of some of these kinds of medicines for pain, but they're conventionally used.

Now, physical therapy helps, massage helps. Some patients, particularly if the pain is in the neck, will work with a massage therapist or chiropractor or physical therapist [or will try] relaxation techniques, tai chi, swimming, yoga. So a number of these things which are maybe not conventional medicine are really quite helpful for a number of patients with chronic pain. But I think it comes back to a comment that was made earlier with Piper [which] is, you know, plan your day. If there are certain times of the day when the pain is more likely to be troublesome, see if it is possible to modify your schedule and do it, or work out, if it is at all possible, [do] swimming at that time or PT or whatever. That's not always very practical, but to the extent that one can make some modifications in the schedule, that may go a long way to helping, again, to the extent it's practical.

Trevis:

It's important for our listeners to understand that when their doctor is prescribing off-label, that's okay. There were a couple of drug companies that got into a little bit of trouble a year or so ago for marketing off-label, without having the research. But it's okay to, as you're saying, prescribe some of these drugs for their side effects more than their effects.

Dr. Freedman:

I think what you have to do when you work with your physician is you want to know is, "What kind of clinical trials are there, what's the proof the medicine works? If there is no proof, why are you giving me this medicine? What's the evidence that it does some good?" So I think those are legitimate questions to ask of your healthcare provider is if you're going to provide medicine that's not proven to work, what are the reasons for doing it? What are the risks? What are the potential gains you are going to have? And is this worth doing? And so it becomes an issue of balancing off how disruptive are the symptoms, how much do the symptoms interfere with the patient's daily life, and is, how appropriate is the risk to take? And I think that one of the things I tell my patients is you develop a relationship with your healthcare provider so that when you get into these kinds of difficult binds, you've got a trusting relationship, and you can work together to struggle with this. Because they are, frankly, a struggle for everybody - for the physician, for the nurse practitioner, for the nurse, for all the clinicians who work with MS patients.

Trevis:

Our next question is for nurse Piper here in the studio. Penny in Springboro, Ohio, has e-mailed us a question, "I have relapsing-remitting MS, and my doctor wants me to start a disease-modifying therapy, but I'm terrified of needles." You're not alone out there, Penny. "What can be done to help me with this problem? I know I need to start the medication, but what can I do to get over my fear of needles?" Piper?

Piper:

Well, first of all, I would say just what you said, Trevis, that Penny you're not alone. We hear this quite often. And there [are] actually quite a few solutions that we've come up with. Biogen does have a program now, and it is offered. You can ask your provider. It's offered in different areas. But it's kind of to go over the phobia. If you truly have a phobia, so that's one thing. Two, is also relearning, it's kind of an anxiety injection program. And it's a six-week program. And usually, it's with a nurse physician or a psychologist, and they kind of go over what exactly is scaring you with the needle - a kind of desensitization. And it works. It's worked for a couple of our patients. But the other thing, more practical, that we've found is we have what we call "injection lunch." And this happens every Friday. And it's for patients who are on Avonex [interferon beta-1a], and they have problems injecting. And so they don't have to make an appointment. They don't have to pay a co-pay. They just come into our office, and I actually help them with the injections. And right now, we have about four or five people, and it's been going on for about three years. And a lot of people have graduated, so, again, it was kind of a program where at first we were there to help them and support them. And some people, over time, were able to do it. And then other times, they still have a problem. And then also recruiting your family members [can be helpful]. I remember teaching someone how to give an injection. They brought five friends with them. And so they said, "Okay, I have, you know, five weeks. I have someone to help me each week." And, again, it is important to try and do it yourself because [it is] empowering. But it's also important to know, if you do really have a problem, there is help out there, or maybe you can ask your physician or nurse and say, "You know, can I come in here if I have trouble from time to time?" Please talk to your doctor or nurse and say, "You know, what can I do for this?" And another thing, the subcutaneous injections all have devices where you don't have to look at the needle too. You know they have a Repujector, Autoject. So that can also be very helpful with injection anxiety.

Trevis:

And, Piper, just to make sure that we're all clear, the Avonex that you were talking about that's not a subcutaneous, that's intramuscular.

Piper:

Correct.

Trevis:

And there is no injection device to help with that.

Piper:

That is correct. There isn't [a device to help with that].

Dr. Freedman:

All of the companies have a very good training staff that will help patients work through these things. And they all have nurses and clinicians who will help patients. Very often, we have patients who will come to our office for their first several shots. They'll develop their own sense of confidence. They may turn the responsibility over to a family [member] or friend. But eventually, patients will learn to do it on their own. I think that having a team, working it together, and really recognizing that if I thought you were interested, if I thought you loved the idea of a shot, I'd kind of get worried. This is not normal. So, yeah, you can, you really can work through it.

And look, the other question people ask all the time is why are these drugs given by shots? Well, these drugs are all proteins. The three forms of interferon - Avonex, Betaseron [interferon beta-1b] and Rebif [interferon beta-1a] - are all proteins. Glatiramer, which is Copaxone, is what we call a polypeptide, which is it's made up of a string of several amino acids, but effectively [it is] a protein. If one ingests a protein, the stomach sees it as lunch. And so the stomach regards interferon and glatiramer as a burger. And that's the way the same reason that diabetic patients cannot eat insulin. They have to give insulin by a shot. It's a protein. In the future if we can develop ways to bypass the stomach, then maybe these drugs can be given and can be absorbed elsewhere in the GI tract. Or other drugs in the future may not involve proteins, in which case then we can rethink the idea of oral therapy. But I think for all intents and purposes, the drugs that are out there now, the three forms of interferon and glatiramer, are injections.

Trevis:

Our next question is our first phone question for the evening. From Florida, I believe it's Janie, you're on HealthTalk.

Janie:

I have been seeing a therapist, psychologist, for depression, and I have such a terrible memory problem. And she came out and said I need to talk to my neurologist because it's between MS versus depression versus MS, and the three combined. And she said I need to talk to my neurologist to see what he suggested to take for my depression.

Dr. Freedman:

[That's a] very important question. If one looks statistically at large numbers of MS patients, it's quite clear that depression is more common in the MS population than a similar population matched for age and sex. So we know that depression is there. Some of the depression is fairly obvious. MS has a lot of effects on people's lives. And so it becomes a disorder, the depression is a reaction to the disease. But some of the depression is intrinsically part of the illness and may reflect the areas of the brain that are involved, the so-called limbic system, which is the part of the brain that controls emotions, may well be involved in MS as well. So that the depression is in part biological. Some people have raised the question as to whether their depression may be aggravated by the interferons. That's an area of major debate. We really don't know one way or the other whether glatiramer has an effect on depression. But we do know that there may be some component of this which is related to the treatment. Now, that being said, part of the process becomes sorting out what's depression and what's not. Sometimes that may be done with a psychotherapist - psychiatrist, psychologist, social worker. Some of that may be done by having the patient undergo formal neuropsychological testing, which are basically some formal tests to sort out what's memory, what's depression, what's emotional, what have you. And then after sort of sorting those things out, what we then do is work on an anti-depressant, if that's appropriate. There are two groups of anti-depressants, the so-called tricyclics, drugs like amitriptyline, desipramine, nortriptyline; and some of the newer drugs, the SSRIs, drugs like Prozac [fluoxetine], Zoloft [sertraline] and Paxil [paroxetine]; or some of the other newer drugs like Effexor [venlaflaxine] and Wellbutrin [bupropion] and what have you. The decision about those, obviously, comes down to you and your healthcare provider. Figuring out whether counseling or some sort of emotional support will be appropriate also is crucial. So those are the issues.

Now some patients do have difficulty with intellectual functioning or cognitive function. A number of physicians have tried some of the drugs, again, that have been used historically for children with attention deficit disorder, drugs like Ritalin [methylphenidate] and Dexedrine [dextroamphetamine]. They are not approved for MS, but there are times where they may be appropriate considerations. There's a drug called Provigil or modafinil, which we know helps fatigue in MS. It may also help the alertness and may help mental functioning. It's not been proven to do that, but this, again, is a drug that people have worked with to see if this is potentially appropriate for some patients under certain circumstances. That's how we approach the issue.

Trevis:

Mary Jo in Joplin, Missouri, out there on Route 66, has e-mailed us a question, "How can I start an MS support group in my community?" Well, I'm going to take that question, Mary Jo. As many of you may know, I am a support group leader in the Seattle area for the National Multiple Sclerosis Society, and, Mary, that's who I would have you get in touch with, is the National MS Society. And for those of you who have thought about attending a self-help group, typically these aren't pity parties. The leaders have gone through at least some nominal training to make sure that everyone's needs are met. And speaking as a leader and as an attendee, I would have to say that those are excellent groups to get involved in, and, Mary, I applaud you for wanting to take the step and start a group in your area.

Dr. Freedman:

Trevis, let me jump in here. It's fabulous. Go ahead and do it. I've had patients over the years who wanted to do this, and I've said "Go for it!" And the patients who've gone for it have done a fabulous job.

Piper:

I also have a support group and it's moms with MS who have small children. And I think it's really important, too, to realize that there are specific support groups.

Tony:

Numbness has always been my serious problem, and yet I never see any therapies that seem to focus on that issue. I was wondering if there [were] any drugs or therapies or anything that could help with numbness.

Dr. Freedman:

Well, numbness, unfortunately, is something that we really cannot do much about. We don't know how to alter that. We have some degree of success with pain, some degree of success with spasticity. But we are clueless what to do for numbness, and it's very frustrating to me because many patients find it to be really just awful. And we don't know what to do for that.

Trevis:

And our next question is coming in via e-mail from Jake New York, "I've been diagnosed for 20 years now with MS. Is there still any value in going onto a disease-modifying therapy? I've never been on one to date, and I don't know whether I should or not." I'm going to throw this one to Piper, doctor.

Piper:

Every physician's office or MS center is a little bit different, but we say that we know that irreversible axonal damage can happen anywhere in the disease. And so we say time is myelin. It depends on the patient, how they're doing. But a lot of times we are advocates for disease-modifying therapies because we always say, there isn't a cure now, but hopefully we'll have a cure. And when we do, then you'll have saved as much myelin as possible.

Dr. Freedman:

Well, there is not a good answer for this question. One has to be, the skeptic would say, look, this gentleman has had, by definition, a benign course. He has gone a number of years without the disease progressing, which in a sense says to you the biology of his MS may be fairly benign. Now, what I do for patients like that is I will certainly go over the pros and cons of all of the therapies that are available and say these are the risks, these are the benefits. This is what I would expect these drugs to do. Now, if patients are still hesitant, and many are in this situation, I would say go ahead and do an MRI scan in a year, a year-and-a-half or two years. If the patient is clinically stable and the MRI does not show any active lesions, one could reasonably argue that it's okay to continue. Now there are many who would adopt the approach that Piper has mentioned, which is if you have MS, you should be on treatment. I don't know that we know that for sure, but I think certainly what I do tell patients is if you know you have MS and the decision is made not to treat aggressively, I think the corollary of that is that the patient should be followed regularly to see are things really changing? Because if they are [changing], then changing the approach is appropriate.

Trevis:

Next on the phone is Kathleen in Pensacola, Florida. Kathleen, you are on HealthTalk.

Kathleen:

Thank you. First of all, thank each and all of you for all you are and all you're doing. I understand that the most important time to begin treatment is as soon as possible because much damage is happening early on in the disease process. But my question is, after 15 years of dealing with relapsing-remitting, how much are we risking when we stop treatment or periodically skip treatment due to financial difficulties?

Dr. Freedman:

We don't know the answer to that one at all, and that's a crucial question because the way the drugs are studied is with a specific dose. When people have to say why are they dosed the way they're dosed, well, in the original preliminary trials for glatiramer to work or for Copaxone to work, it was found that you had to give it every day. When they did the original trials, using it every other day or even once a week or giving it intramuscularly didn't work. So that's where the dose came from. This was trial and error. Are there other doses that would work? There might be, but we're clueless. So our recommendation is that if you're based on the original pile of studies, which now go back well over 10 years, that if you're going to be on that drug, you've got to stay on it at that dose. The same has happened with Betaseron and Rebif. The reason those drugs are given the way they're given is that's how they work. I mean people talk about high-dose, high-frequency interferon. The point is the reason the doses are three times a week is because that's the way they work. If you give those drugs once a week or twice a week, they simply don't work. Avonex, the way it's formulated, given intramuscularly, works because it's an IM drug and giving interferon intramuscularly is different biologically than giving it subcutaneously. It's not that one is better than the other. They're set up that way because that's how we know that they work. Now, that being said, can you get by with less Avonex? Can you get by with less Betaseron or Rebif? Well, we don't know for sure, but the data would suggest that you can't. That, in fact, the original pilot studies show that the reason they set these drugs up this way is that's how you got the pharmacologic, the pharmaceutical and the clinical benefits. Now, do the drugs continue to work after a patient has been on them for five or 10 years? We don't know. The disease seems to change; whereas, we know that MS is much more an inflammatory disease early. There is much less active inflammation judging by MRI scans and judging by changing number of relapses over time. And so the question that many have said is are these drugs as effective later on as they are early? There's no question that if you look at the early trials with Betaseron, Rebif, Avonex, Copaxone, you get effects that are roughly 30 percent decrease in relapses, 30 something percent decrease in progressive disability. In patients who are studied with Betaseron with secondary-progressive MS, the best results were achieved in a European study, but those results were in the 20 percent range. And the thought is that when you treat patients who have long-standing MS, you're going to get less benefit because there's probably less inflammation. Rebif was looked at in secondary-progressive MS in a European trial. They couldn't demonstrate any effect on secondary-progressive MS. Avonex was looked at, and they had some benefit with very specific end points, a thing called the Multiple Sclerosis Functional Composite Scale, but it wasn't across the board. There was some very limited effect. So the drugs should be taken in the recommended dosage, but whether they are as effective later on, we don't know.

But the other part of your question was the financial issue. And there is no question the medicines are expensive. We don't yet know how the new Medicare Part D is going to play out on this and how this will affect the accessibility for patients to get these medicines. We're hoping that this will be a solution for many patients if Medicare Part D works as we hope it will work. Then this might solve some of the economic variables that many patients struggle with.

Trevis:

Now, on the phone from Fremont, Nebraska, is Nancy. Nancy, go ahead. You're on HealthTalk.

Carrie in Redwood City, California, asked the question, "Can or should those of us with MS get a flu shot every year?"

Dr. Freedman:

The answer is yes. And there is no evidence that the flu shot will aggravate the MS, and there are many who would say that you'd like to be able to prevent major flulike illnesses, which often are provokers of attacks. So, yeah, go ahead and get the flu shot. That's fine.

Piper:

I just wanted to go back just for one moment about the financial difficulties the patient had expressed. Please, again, talk to your healthcare provider because all of the drugs, ABCR drugs, do have assistance programs. And also with medications that are expensive, symptom management medications, they have assistance programs, too, and we get a lot of patients free drugs or discounted drugs. So, please, don't let that be a barrier and talk to your healthcare provider.

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